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The dynamics of patient organizations in Europe

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252 pages

Patient organizations today play a major role in the scientific, economic and political arenas. They have become the quasi-obliged partners of researchers, industrialists and political authorities. This book investigates this quite recent configuration by offering an in-depth exploration of three thematic issues: To what social and political stakes are patient organizations confronted as regards the transformation, production, circulation, and governance of knowledge? The involvement of patient organizations in the economic world is acknowledged as confrontational, especially when it comes to relationships with the pharmaceutical industry. To what extent do opposition, "instrumentalization", or cooperation constitute relevant models if we are to account for the multifaceted relationships between patient organizations and economic actors? Patient organisations are the structuring actors of networks, coalitions, and collectives throughout Europe. What social and political concerns arise from these particular forms of collective action on a national or European scale? Each question is first examined through an academic and grey literature review. Then the emerging topics and critical issues are identified and discussed, drawing upon exchanges of experiences, viewpoints, and reflections between actors involved in patients' and users' movements and social scientists. The dynamics of patient organizations in Europe raises a number of questions of interest for all actors from the health system, as well as for social scientists. This book intends to contribute to the reflection on further research agenda setting and policy-making.


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The dynamics of patient organizations in Europe
Madeleine Akrich, João Nunes, Florence Paterson and Vololona Rabeharisoa (dir.)
Publisher : Presses des Mines Year of publication : 2008 Published on OpenEdition Books : 22 May 2013 Serie : Sciences sociales Electronic ISBN : 9782356710963
http://books.openedition.org
Electronic reference: AKRICH, Madeleine (ed.) ; et al.The dynamics of patient organizations in Europe.New edition [online]. Paris: Presses des Mines, 2008 (generated 17 December 2013). Available on the Internet: . ISBN: 9782356710963.
Printed version: ISBN : 9782356710079 Number of pages : 252
© Presses des Mines, 2008 Terms of use: http://www.openedition.org/6540
Patient organizations today play a major role in the scientific, economic and political arenas. They have become the quasi-obliged partners of researchers, industrialists and political authorities. This book investigates this quite recent configuration by offering an in-depth exploration of three thematic issues: To what social and political stakes are patient organizations confronted as regards the transformation, production, circulation, and governance of knowledge? The involvement of patient organizations in the economic world is acknowledged as confrontational, especially when it comes to relationships with the pharmaceutical industry. To what extent do opposition, "instrumentalization", or cooperation constitute relevant models if we are to account for the multifaceted relationships between patient organizations and economic actors? Patient organisations are the structuring actors of networks, coalitions, and collectives throughout Europe. What social and political concerns arise from these particular forms of collective action on a national or European scale? Each question is first examined through an academic and grey literature review. Then the emerging topics and critical issues are identified and discussed, drawing upon exchanges of experiences, viewpoints, and reflections between actors involved in patients' and users' movements and social scientists. The dynamics of patient organizations in Europeraises a number of questions of interest for all actors from the health system, as well as for social scientists. This book intends to contribute to the reflection on further research agenda setting and policy-making.
TABLE OF CONTENTS
Introduction
Chapter 1. Experience, knowledge and empowerment: the increasing role of patient organizations in staging, weighting and circulating experience and knowledge STATE OF THE ART PRELIMINARY REFLECTIONS. DISCUSSIONS: A SYNTHESIS.
Chapter 2. Patient organizations and the economic and industrial world - Towards new types of relationship? STATE OF THE ART PRELIMINARY REFLECTIONS. DISCUSSIONS: A SYNTHESIS.
Chapter 3. Social and political stakes of associative networks, coalitions, and collectives STATE OF THE ART PRELIMINARY REFLECTIONS. DISCUSSIONS: A SYNTHESIS Summary of the discussion, group 2
Chapter 4. Working with Patient. Organizations: A Few Institutional Experiences Involvement of patient and user organizations in public health institution: the case of the Haute Autorité de Santé (HAS) in France Public involvement in Research, Promoting public involvement in NHS public health and social care: The case of Involve in the UK Empowering patient organizations through social science research: the case of Innovia Foundation for Medicine, Technology & Society
Conclusions Madeleine Akrich, João Nunes and Vololona Rabeharisoa Social and political stakes of patient organizations as regards transformation, production, circulation and governance of knowledge Patient organizations and economic actors: opposition, "instrumentalization"or cooperation Social and political stakes of associative networks, coalitions, and collectives
Bibliography
List of participants
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Introduction
 MEDUSE was a Specific Support Action, funded by the European Commission Sixth Framework Programme, and coordinated by ARMINES-Ecole des mines (Paris, France) . MEDUSE was 1 conceived of as a cooperative action, involving social scientists and various stakeholders in the domain of health and medicine. At a more general level, MEDUSE contributed to a series of European actions whose objectives are to enhance collaboration between researchers and civil society organizations.  The underpinning rationale for MEDUSE was to open up dialogue between social scientists and non-academic actors, and to conduct collective reflection on issues of high political relevance. Three issues were put on MEDUSE agenda: The dynamics of patients' organizations in Europe The emergence of new technologies and responsibilities for healthcare at home across diverse European systems and cultures Cross-national and European perspectives on health safety agencies.  This book offers an insight into exchanges that took place during a two-day conference on the dynamics of patient's organizations in Europe. The aim of the conference was to discuss actual practices that actors are developing and problems they are confronting, and to draw on exchanges for setting a research agenda on questions that need further consideration. The conference was conceived of as a participative event. This meant that sharing of experiences between participants was privileged. To prepare the event, the strategy used by the conference organizers included firstly a review of the “state of the art” on the issue, drawing upon selected academic and “grey” literature. However, the conference was not just designed to reflect the current state of knowledge, but also to identify ways in which that knowledge can be examined, exchanged, and transferred across and within different groups for whom the issue is of interest. It further aimed to identify questions which have, to date, received only limited attention. To achieve this, the conference organizers conducted a series of focus groups gathering ten to fifteen participants around a series of themes drawn from the “state of the art”. These focus groups helped to draft a “policy paper”, mixing academic knowledge and non-academic concerns, that served as a basis for the conference. This “policy paper” was circulated to participants in advance of the event. Besides, a few speakers were asked to offer introductory statements, by expanding on the “policy paper”.  The conference was organized around the three themes we previously identified during the preparation phase. Each theme was introduced by speakers on a plenary session. To render the event as participative as possible, the audience was divided into three randomised discussion groups. The theme was then discussed in the three groups (the three groups run simultaneously). Each group had a facilitator, as well as a respondent whose role was to keep notes on the discussion and, close to the end of the session, to provide a summary of the content of the discussion. The facilitator allowed next a short period of time for the participants to comment on the summary.  These sessions were extremely successful. The discussions tended to produce interesting examples and counter-examples relating to the themes under discussion. The discussions were always lively and stimulating. The groups were meant so that participants eventually met everyone, thus facilitating the best possible sharing of ideas across disciplines, nationalities and
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backgrounds. The conference ended up with a closing plenary session, comprising three papers from persons who have in-depth experience/expertise of working with patient organizations, in research institutions or administrations and whose “ profile” is contrasted. Permission was requested from participants to digitally record the sessions and to use quotations from these recordings in this book, if appropriate. We would like to address our warmest thanks to them all, for their enthusiasm and invaluable inputs.  The structure of the book reflects the organization of the conference. For each of the three themes, it comprises an overview based on the analysis of literature, followed by the papers presented during the plenary session and which are collected in a «Preliminary reflections» part; then, a synthesis of the discussions that occurred in each group is presented (except for the second group in the third session, due to technical problems with the recordings). The fourth part comprises the contributions presented during the closing plenary session. In a last section, we highlight the main conclusions that can be drawn from the conference and present recommendations for research agenda setting and policy making. This event was prepared by Madeleine Akrich, Florence Paterson, and Vololona Rabeharisoa (CSI, Mines Paritech) and Jo ã o Arriscado Nunes, Marisa Matias, Angela Marques Filipe (CES, Coimbra university) for the European Commission Sixth Framework Programme Specific Support Action, MEDUSE (Governance, Health & Medicine. Opening dialogue between social scientists and users).
NOTES
1.http://www.csi.ensmp.fr/webcsi/items/
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Chapter 1. Experience, knowledge and empowerment: the increasing role of patient organizations in staging, weighting and circulating experience and knowledge
STATE OF THE ART
Vololona Rabeharisoa The role of patient organizations in the staging, weighting and circulating of knowledge and experience data on diseases and healthcare problems has been investigated by several social science disciplines in the past few years. Social scientists have joined patient organizations in calling for a redistribution of power between patients and specialists, in decision-making, which directly concerns patients and involves scientific and technical knowledge. For several years, political authorities in most European countries have likewise been explicitly urging medical institutions to improve their governance by paying attention to the multiple stakeholders, including patient organizations. We will briefly consider the emergence of this claim within the associative world, before putting into perspective the analytical frames mobilized to deal with it.
Sharing of experience, opposition to biomedicine, and co-production of knowledge with specialists: POs' epistemological claims throughout history
The sharing of patients' experiences of their disease is the raison d'etre of many patient organizations. Historically, the sharing of experience has been the rationale for self-help and mutual aid. Borkman's seminal work on Alcoholics Anonymous, considered as the founding fathers of the self-help and mutual aid movement, clearly illustrates this (Borkman, 1997; 1999; Rabeharisoa and Callon, 2000). When Alcoholics Anonymous was founded in 1937, alcoholism was seen in the US as a public order problem that fell under the jurisdiction of the police and psychiatry. People found in an advanced state of inebriety were usually interned and subjected to psychiatric shock treatment. The problem was that most of these people systematically relapsed. Based on the evidence of this failure, two desperate alcoholics learned together that willpower alone, which psychiatric treatments were supposed to restore, was not enough. When they created the first Alcoholics Anonymous group two years later, the first target of their opposition was psychiatry. Their criticism was twofold: first, against the centralized and bureaucratic functioning of this institution, which precluded the treatment of local, urgent situations; and second, against psychiatric treatment itself, which they deemed to be completely ineffective. By discussing this issue together, they realized that this treatment overlooked what it actually meant to be alcoholic and live as an alcoholic, with all the implications in the person's working, family and social life, with the ups and downs, the hope of breaking free of the addiction, followed by episodes of total despondency and sometimes even the wish to commit suicide. They believed that psychiatric treatment could not and did not know how to deal with an alcoholic's internal chaos, in relation to which the idea that it was enough to restore a little willpower seemed completely unrealistic. The solution that they proposed to other alcoholics was to get together anonymously, when they wished to and for as long as they wished to, to share their difficulties, hopes and struggles, and to draw on the group for strength and support to remain sober day after day. This solution was not always successful, but it did enable enough alcoholics to break free of their addiction for professionals to consider it as an effective therapeutic approach. What was the source of its
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effectiveness? It was based on a combination of the experience of alcoholism of those concerned, and now widespread but then emergent scientific theories on the notion of dependence. These theories posited that it was not the person who, through weakness, gave him- or herself up to alcoholism; it was the alcohol itself, an active substance, which in certain individuals created a phenomenon of alienation through mechanisms that were not known precisely. These theories of dependency were crucial for Alcoholics Anonymous, first because they lightened the load of guilt and responsibility that the psychiatric institution had put on the individual's shoulders, and second because they made it possible to propose a very different therapeutic principle from traditional psychiatric treatment. This principle of sobriety, as it was called, consisted of the claim that willpower was necessary but not enough; above all, the person had to avoid any exposure to alcohol at every minute of every day. It was to help people to stick to this path of sobriety that Alcoholics Anonymous was founded. Within these groups individuals learned that they shared a certain experience of alcoholism, that this shared experience gave meaning to their stories, and that it was this common meaning that gave them the strength to put order into their personal lives. The mutual self-help model was adopted and adapted by the first patient organizations created in the 1940s and 1950s throughout North America and Western Europe around chronic diseases. At the heart of this model the sharing of experience is both a principle of identity and an epistemological claim: it is what endows a patient organization with a collective identity, and with its own competences and prerogatives vis-à-vis medical professionals. Calling for their shared experience to be recognized as a genuine form of expertise is a vehicle for patients' empowerment. The idea of empowerment was to take on a more radical meaning through a number of criticisms that emerged in the sixties and seventies against the very principles of self-help-mutual-aid. These principles were criticized for causing people to turn in on themselves, in two ways: first, the over-individualistic nature of people's membership of these groups. Due to their mode of constitution and functioning, these groups were said to be nothing other than collections of individuals who may have shared the same problems and experiences but who, in a sense, did not form a collective with real power and a project. From this point of view, some considered that Alcoholics Anonymous and the first self-help groups created in their wake were not a sufficiently clear departure from the institution against which they had been formed: psychiatry (Emerick, 1996); second, the fact that these groups did not move into the public sphere and discuss the structural causes of their problems, around which collective mobilization had to be organized, with professional and political authorities. They challenged the fact that the people concerned dealt with their difficulties themselves, and that these difficulties were consequently maintained in a private sphere extended to include others with the same problems. This criticism led to the emergence of new kinds of groups, which based their philosophy on the new social movements that began to spring up in the US from the 1960s. These groups were formed to represent and defend categories of the population who were stigmatized or excluded because of their condition. Their aim was to assert their members' collective identity in the public sphere, and to call on the political authorities to take specific actions guaranteeing their rights and interests. The advocacy groups were particularly sensitive to the medical profession's threats against their identity, which they were striving to assert and defend. The disability studies movement clearly illustrates this attitude. Led exclusively by disabled persons, it was both a new social movement (Dowse, 2001) and a social science research movement, which developed its own disability theories
to serve the identity and cause of its members. Disability studies constitute a plural movement but all, to a lesser or greater degree, share the same conception of their relations with knowledge and biomedical activities. One of the political and epistemological manifestations of disability studies is concerned individuals' demand to be "the" legitimate producers of knowledge on situations of disability. It is thus the precedence of individuals' subjective experience over any objectifying knowledge, especially medical knowledge, that is asserted. The people who promote these lived experiences are often anthropologists or sociologists who apply certain narrative techniques to highlight the "lived" aspect (Murphy, 1990). It is the individual him- or herself, the only subject and object of his or her own experience, who is the subject and object of these narratives. The accent is on the construction of an individual who, through his or her otherness, has the cognitive and moral authority to challenge the normalizing knowledge and practices of mainstream medicine. This is why we can consider these groups as opponents of (bio)medicine and its interventions, which they see as an institution of social control (Zola, 1986). This is not strictly speaking a rejection of any form of institutionalized knowledge, but a specific refusal of certain forms of supposedly alienating knowledge. Stuart Blume (1999, 2000) clearly shows this in his research on deaf communities who refuse cochlear implants and want their deafness to be recognized as a non-negotiable element of their individualandcollective identity. Their refusal of medicine and its technologies is not an opposition in principle to any scholarly knowledge and any form of research, but a refusal of certain corpuses of knowledge and of interventions which, by wanting to correct the disability, could cause the disabled individuals' disappearance as people with a different identity and lifestyle. The deaf communities that Blume studied refuse hearing aids but do draw largely on linguistics and socio-linguistics to show that sign-language is a language in its own right. It is through this language that the stigma is reversed and that these deaf people can say, positively: 'Deaf we are and deaf we shall remain'. One could therefore say that advocacy groups contribute substantially towards people's empowerment - an empowerment which, in their opinion, traditional self-help groups have failed to seek because they are too preoccupied by mutual aid and therefore not active enough in the political assertion of their own identity and knowledge. 10The scientific and therapeutic activism of certain patient organizations, which appeared in the 1980s can be considered as an inverted form of the mechanisms of patients' empowerment found in advocacy groups. The characteristics of the diseases and the conditions around which this activism is organized play a decisive part. Most often these are new, lethal diseases and/or ones on which knowledge is uncertain or insufficient, or diseases that had been forgotten or were largely unknown, or even conditions whose status as diseases is not recognized. Aids, rare genetic diseases, and emergent diseases related to environmental problems are typical examples. These are diseases and conditions which, at some point in their history, are on the fringes of nosological fields or even entirely absent from them. Their medical, social and political recognition is weak or even non-existent. The individuals concerned by these diseases or conditions are confronted with three difficulties: the lack of medicine's cognitive and moral authority faced with situations about which it knows little or has difficulty treating; in certain cases the absence of recognition of their status as patients; the difficulty, for the same reason, of forming groups of people with the same condition. 11It is understandable that, faced with these difficulties, the people concerned first have to obtain recognition of their diseases before they can emerge from the shadows and call on specialists. 12Not all conditions are equal in this respect. The first task of the persons concerned and their organizations is nevertheless always to work at objectifying their conditions, that is, to
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